Pathways Fall 2014 (Volume 3, Issue 4)

Canada’s Lymphedema Magazine

Pathways

FALL 2014

Empowering patients and professionals

2014 International Conference Highlights

Cognitive Behavioural Therapy Risk Assessment Tool W H AT’S INSIDE... Educating Nurses I Global Data I Patient Perspective I Affiliate Profile I Ask the Expert B425 Pathways_Fall_2014_REV.indd 1

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Editor’s Message

Every Contribution Counts!

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anada’s focus on lymphedema has come a long way, with many provincial organizations plus a national framework to help lead the way. We can all be proud that Canada was well represented at the recent International Lymphedema Framework (ILF) Conference in Scotland, by contributing research posters, presentations and chairing some sessions. The highlight was having our work acknowledged by international colleagues, who voted the Canadian Lymphedema Framework “most inspiring organization.” The Alberta Lymphedema Association also won an award for Influencing Health Policy, recognizing their recent advocacy successes in accessible treatment in their province.

concepts of her Glasgow presentation in an article for our readers. Cognitive behaviour impacts how patients accept and learn to live with their lymphedema – crucial for those with a chronic condition.

Although surgical techniques are evolving and it is exciting to see where these procedures may lead, surgery for lymphedema remains a controversial topic. Dr. Towers and Dr. Keast describe the various techniques and share their perspectives on how surgery may fit into a total management regime for those who have extreme lymphedema and have not been successful with conservative treatment.

Pamela Hodgson writes how she and her multidisciplinary team at the MUHC lymphedema clinic are promoting the involvement of community nurses within the caring cycle. This is an important step in education that needs to take place across the country.

The Risk Assessment Guide is an educational tool that has been used in Australia for many years. It helps patients, and those at risk, along with their health professional team assess the extent of lymphedema risk. Based on the experiences of Professor Neil Piller and his team, it is intended for education, and is not based totally on evidence in literature. It can help provide guidance towards possible extra precautions and treatment protocol that may Professor Neil Piller of the ILF presents be appropriate. award to CLF Co-Chairs, Dr. Anna Towers Access to lymphedema treatment is a (left) and Dr. David Keast (right) and global issue and so providing data for evidence Pathways Editor, Anna Kennedy. based health policy recommendations is key.

Janice Yurick, a Pathways Editorial board A lack of statistics will enforce the belief member, gives us a great review of the that lymphedema is a rare condition, which conference, sharing the highlights and is why projects like LIMPRINT are crucial.

Large global data sets will provide themes from plenary sessions and breakout a common language—one where sessions she attended.

I am fortunate to be able to attend lymphedema can be described international conferences and network, learn and discussed in the same way. and meet committed professionals intent on In the words of Professor Christine improving diagnosis, treatment and awareMoffat, Chair of the ILF, “we will ness of lymphedema. One such individual is never change the face of lymphedema Jane Durston, who was willing to share the if we don’t develop data. Only then will Fa l l 2 0 1 4

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The highlight was having our work acknowledged by international colleagues, who voted the Canadian Lymphedema Framework “most inspiring organization.”

we be able to move ignorant understanding of lymphedema from a rare condition to a massive and global health problem.”

Maria Atherton’s patient perspective dictates how her struggles with lymphedema and access to treatment strengthen her will to promote research and implementation of proper care. As patients are at the heart of the lymphedema community, contributions like those she makes to her provincial association are so important. Anyone can make a difference!

There are many ways that you can contribute. The CLF always welcomes volunteers to join their working group committees, support project and administrative work or contribute to this magazine. Of course, your support to any one of our provincial affiliates is equally important. LP

Anna Kennedy

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Contents

Fall 2014

n

Volume 3 Issue 4

Publisher Pathways is published four times per year by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates.

A three-day long event with over 100 presentations, workshops and seminars; this year’s ILF conference truly demonstrated the passion and dedication put forth by national frameworks and healthcare professionals alike.

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Managing the Psychosocial Aspects of Lymphedema Using Cognitive Behavioural Therapy skills towards better self-care

Editorial Board David Keast MD FCFP Winkle Kwan MD FRCPC Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy Editorial Intern Nicole Boulet Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. While all material is subject to Editorial Board approval, inclusion does not constitute an endorsement or reflection of the views and opinions of the CLF and its Editorial Board.

Contents may not be reproduced without written permission of the Canadian Lymphedema Framework.

Stock photos in this issue: CanStockPhoto Other photos are courtesy of S. Price and D. Hannah

Canadian Publications Mail Agreement 40065546 ISSN 1929-1418 Printed in Canada

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Successful care of lymphedema starts with effective self-management.

This research suggests that subtle changes in the behaviour and lifestyle of patients could revolutionize a patient’s perspective on living with lymphedema.

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Lymphedema Risk Assessment Guide

A practical check list to help determine your risk of developing or worsening lymphedema in your arms and/or legs.

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Encouraging the development of lymphedema management as part of home care services

A program based out of McGill University Health Centre mandates to educate, undertake clinical research, and promote standards of best care to lymphedema patients and healthcare professionals.

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Subscription Rates (1 year) Canada–$25.

International–$50.

Single copies and back issues–$7.

Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: canadalymph@live.ca www.canadalymph.ca

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Review of the 2014 ILF Conference: Glasgow, Scotland International collaboration in support of lymphedema research

Ask the Expert

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Surgery for lymphedema is often a final option and should be integrated into a full lymphedema service of early diagnosis, conservative treatment and effective follow up.

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LIMPRINT A research study The International Lymphoedema Framework has made progress on LIMPRINT, an exciting new research program designed to create tools to measure the impact of chronic edema, provide evidence for practice and to be a support mechanism for reimbursement.

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Life with Lymphedema A post breast cancer diagnosis of lymphedema inspired this patient’s will to promote research and proper care, to her province’s lymphedema association.

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Conference Review

Highlights of the 2014 ILF Conference: Glasgow, Scotland

International collaboration in support of lymphedema research A three-day long event with over 100 presentations, workshops and seminars, this year’s ILF conference truly demonstrated the passion and dedication put forth by national frameworks and healthcare professionals alike.

By Janice Yurick

and industry partners. They advocated the value of scientific debate and encouraged the use of social media, such as the conference twitter feed, to promote lymphedema awareness efforts.

Day One of the conference featured two plenary sessions. The first session, “Strategy for Epidemiology,” was led by two members of the ILF Executive; Christine Moffatt from the University of Nottingham, UK and Isabelle Quéré from the University of Montpellier,

A predominant conference message was patient engagement, self-management, and active lifestyle.

France. They spoke passionately about the distinct lack of international epidemiological data, which leads to many myths and misconceptions surrounding lymphedema and chronic edema. The collection of an

Janice Yurick PT works at the Cross Cancer Institute in Edmonton, Alberta as the Manager, Department of Rehabilitation Medicine overseeing the delivery of physiotherapy, occupational therapy, and speech-language pathology. Janice also sits on the Editorial Board for Pathways.

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international global dataset would allow the ILF to accurately describe the prevalence and incidence of chronic edema. As such, the ILF has worked over the past year to develop the LIMPRINT research study. Preliminary data from three pilot sites in the UK, Denmark, and France was presented to the audience.

The second plenary session of Day One was called, “Lymphoedema and Co-morbidity in a Global Context.” The chair of the session, Dr. Vaughan Keeley, posed a question, “is there a difference between chronic edema

and lymphedema? Does this affect treatment?” He stated that it could be argued that the lymphatics are involved in all types of edema. Chronic edema is a broad diagnosis, including all edemas persisting for greater than three months, often with mixed etiology.

Clement Bagnoa from Burkina Faso, West Africa gave a fascinating presentation on his nation’s efforts to address the serious side effects of lymphatic filariasis. Lymphatic filariasis is endemic in this small country

Photos: S. Price

Reduced incidence, prevalence and impact: making these realistic goals, was the theme of the International Lymphoedema Framework’s (ILF) 5th International Conference - a very fitting theme for an organization that strives to improve standards of lymphedema prevention and care through international collaboration.

The 2014 conference was held in the beautiful and historic University of Glasgow, a place of learning, discovery and shared knowledge for more than 500 years. An inspiring setting for any conference! Covering a wide range of topics, the conference featured over 150 oral and poster presentations. There was a truly international flavor, with presenters from around the globe including: Africa, India, Australia, Europe, Japan, Canada, and USA. First world countries are exploring the use of phenotyping, microsurgery, and technology to better manage lymphedema, while developing nations discussed basic public health and hygiene challenges. A predominant conference message was patient engagement, self-management, and active lifestyle.

The conference began in fine Scottish style with the delegates being piped into the regal Bute Hall. Welcoming the delegates were Professors Anton Muscatelli and Neil Piller who encouraged the development of national frameworks, and the involvement of patient

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of 17 million where an estimated 182,000 persons are affected. Bagnoa described how basic hygiene, washing the affected limb with soap and clean water four times per day, was shown to reduce the seizure rate from 78% to 39%. This study was published in the September 2011 edition of Acta Tropica.

Unfortunately, as the funding for the study ended, so too has access to basic supplies such as soap, buckets and clean water.

Dr. Peter Mortimer of St. George’s Hospital, London, spoke of the progress made in accurate phenotyping for primary lymphedema.

Through phenotyping, there are now over 20 classifications of primary lymphedema. Dr. Mortimer highlighted the importance of molecular investigations to identify causal gene mutations. Understanding the mechanism of lymphedema will drive the development of accurate targeted drug treatment. As an example, he described Proteus syndrome, which is a failure of the AKT-protein

functioning. Using the Europol questionnaire on quality of life, they found that compared with norms, patients have markedly reduced mobility, problems with self-care, more anxiety and depression, and lower total health index.

Japan faces a super aging society. Today, nearly 22% of the Japanese society is over the age of 65. Professor Junko Sugama spoke about how, as a result, her country faces healthcare challenges. Rates for chronic illnesses including chronic edema are climbing. Dr. Sugama described a pressure ulcer prevalence study. Interestingly, chronic edema occurred in 24-44% and was the highest risk factor for pressure ulcer development. She also described a recent government regulation to try to prevent pressure ulcers, linking reimbursement to adequate risk assessment.

Advancements in edema and skin integrity screening have been made using pocket-sized ultrasound machines to assess skin and subcutaneous changes.

sound to diagnose lipedema, proposing that ultrasound may be able to classify lipedema using sonametric features to differentiate between obesity and lipedema. Sandrine Godin presented on the novel use of 3D laser scanners to assess lymphedema volume.

Yolande Borthwick, of Scotland, presented on the sensitivity of the figure-of-eight method of measuring hand circumference, and found strong correlation with volumetric measurement but was sensitive to changes in hand size. José Smeenge, of the Netherlands, presented a study on muscle strength and functional exercise capacity in patients with lipedema and obesity. Using a MicroFET to assess quadriceps muscle strength, lipedema patients had 30% less strength as compared to the control group.

Conference presenter Dorit Tidhar (middle) and two members of the Israeli Lymphedema Association.

Dr. Hugo Partsch, Emeritus Professor of Dermatology, Medical University of Vienna, Austria.

Professor Neil Piller (left) presents award to Professor Christine Moffatt, Chair of the International Lymphoedema Framework.

Kinase B pathway resulting in progressive overgrowth of the limb. Rapamycin is showing promise as a drug therapy for this condition.

Dr. Peter Franks spoke of the psychosocial impact of lymphedema. In one study, they found that eight percent of patients were forced to stop working because of their edema. This represents a great financial loss, due to declined productivity. In a case control study, they determined that lymphedema patients are more likely to be single or divorced, are less likely to own their own house and more likely to rely on government housing. Lymphedema affects physical function, general health, mental health, and social

In addition to the plenary sessions, Day One offered a myriad of workshops and concurrent sessions. There were several practical sessions, including a workshop on lymph-taping

by Joyce Bosman of the Netherlands, and an entire track on assessment and lymphedema monitoring. Ultrasound was described as an effective tool to use in evaluating tissue change. Dr. Jie Deng presented on the use of ultrasound to grade fibrotic change in patients with head and neck cancer related lymphedema. Her study found a statistically significant correlation between clinical grading of fibrosis and ultrasound imaging. Wouter Frank Hoelen presented on the use of ultra-

for Scotland, discussed one of the biggest challenges facing healthcare systems today: aging populations with chronic medical conditions and multiple co-morbidities. The aim of services is to support these patients to live well in the setting of their choice, with a focus on primary care. The government is acting on recommendations for activities to identify lymphedema incidence and prevalence, to develop pathways for management of those with cellulitis, and those who may require surgery.

Eunice Muir of the eHealth Network of the Scottish government spoke of a strategy on digital and health informatics.

Technologies such as Telehealth and Telecare

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Day Two Morning plenary session focused on “Patients, Partnerships and Technologies.”

Dr. Frances Elliot, Deputy Medical Officer

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are being used to reach those in rural and remote areas. Discussions are occurring about the use of mobile technology to deliver care and support. An example of the type of information that is shared can be found online at www.livingitup.org.uk Derek Barron, Associate Nurse Director, NHS Ayrshire and Arran, stated that healthcare is the second most searched term on Google, and 85% of people use the internet to check medication and prescription information. He encouraged delegates to become more familiar with the various social media sites to better interact with the community as well as with persons of influence for advocacy efforts.

Anita Wallace and Karen Friett of the Lymphedema Support Network (LSN) UK shared their efforts on reaching general practitioners (GPs) to increase their awareness of lymphedema. Eighty-six percent of patient respondents to an LSN survey stated that improving GP education should be a priority. The LSN partnered with the British Medical Journal to produce an online learning module. Each of the 4000 LSN members were sent a postcard advertising the session, for them to personally deliver to their GPs. Approximately 2600 UK physicians and over 4500 physicians worldwide have completed the module and it became the 10th most popular module out of 1000 on the British Medical Journal website.

The morning plenary concluded with the launch of the book Impressed by You! by the Netherlands Lymphedema Framework.

This book, a collection of wonderful photographs and real stories by real people suffering from lymphedema, is available in both Dutch and English. Over 2000 copies have been sold to date.

“Supporting Self-Management,” was the title of the afternoon plenary session on Day Two. The Dutch presentation on “The Patient in the Lead” quoted Huber, saying, “Health is the ability to adapt and self-manage.”

Presenters Robert Damstra and Ad Hendrickx felt that 60-70% of patients with chronic disease should be able to self-manage. They described strategies aimed at promoting independence, coaching and guiding the patient to take responsibility and become an active participant in their own care. They felt that a key role for the healthcare provider is to share and spread knowledge, empowering patients and supporting them in shared decision making and self-management.

Dr. Elaine Coulter of the University of Glasgow gave a fascinating presentation on “Mobile Technology to Support SelfManagement in People with Long-term Conditions.” She illustrated the advantages of using technology to improve healthcare access. Dr. Coulter’s team has developed web-based exercise videos and an online exercise diary. Her preliminary work with multiple sclerosis patients showed that webbased exercise instruction and monitoring is feasible. A fully powered Randomized Control Trial (RCT) is required to understand

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efficacy. She also shared a smartphone app, called Starfish, that was developed as a behaviour change intervention to encourage physical activity. The app was piloted with 24 stroke patients over six weeks.

It proved effective in increasing daily step count and demonstrated improvements in quality or life, fatigue and walking speed.

“Staying Active: Research into Exercise and Its Effects on Lymphoedema Risk and treatment in People with Cancer,” was presented by the University of Dundee’s Dr. Anna Campbell, founder and Director of CanRehab. Dr. Campbell told the audience that strong research evidence exists to support the role of physical activity as a means of reducing cancer recurrence rates.

Specific to lymphedema, Dr. Campbell discussed a recent review by Kwan et al. in the Journal of Cancer Survivorship that concluded that slowly progressive exercise is safe for those with lymphedema and may in fact, have a protective effect for women who have had five or more axillary nodes removed.

To conclude the afternoon plenary session, Dr. Neil Piller of Flinders University, Adelaide, Australia, gave a talk directed to those living with lymphedema, on what patients, partners and careers might be able to do to manage lymphedema. He stressed the importance of self-management including healthy lifestyle, and adherence to lymphedema management regimes.

The second day of the conference also offered practical sessions, workshops and continued on page 8

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Eighty-six percent of patient respondents to an LSN survey stated that improving GP education should be a priority.

two different concurrent sessions each with multiple tracks of presentations to choose from. Jie Deng found in her large survey study that people who reported more frequent use of compression garments and bandaging were less likely to have lymphedema associated pain and numbness.

Determining lower limb volume and dominance in healthy subjects was the objective of Jessica Thompson’s simple but insightful study. Of the 100 participants, 86 were right leg dominant. On average, Thompson found the dominant leg limb volume was 4.5% greater than the nondominant leg. Rajni Singh reported on a public health initiative in Bihar, India. In this region of India, 89% of the 100 million inhabitants live in rural areas. Leprosy and lymphatic filariasis are prevalent. The World Health Organization (WHO) advocates that lymphatic filariasis is preventable by giving entire at-risk populations 2 drugs (albendazole and DEC). The Bihar region undertook this mass drug distribution initiative but, sadly, post-distribution analysis found that only 50% of the people who were given the drugs actually took them. Singh suggested reasons for non-adherence: inadequate information and explanation about the drug program by public health officers, competition with the polio program, and conflict with a local religious festival.

In contrast, was Italy’s Dr. Francesco Boccardo’s work using LYMPHA, a microsurgical technique, to prevent lymphedema in axillary node dissection patients who have BMI’s greater than 30 and would be considered at high risk of developing lymphedema. To date, of the 74 patients who have undergone this surgical procedure only three have developed lymphedema.

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Assessing Impact on Function, presentations were made on the efforts of international lymphedema experts to establish International Classification of Function (ICF) core sets for lymphedema. Twentythree lymphedema experts gathered in Glasgow prior to the ILF conference to produce the first draft of an ICF core set and brief core sets for upper extremity, lower extremity and midline lymphedemas.

This initiative will describe and identify the most important factors influencing patients with lymphedema.

Dr. Vaughan Keeley (left), Scientific Chair of the ILF conference with Professor Neil Piller, Director of the International Lymphoedema Framework at the reception ceremony.

Final Day The 2014 ILF Conference began with an overview of the ILF’s work.

LIMPRINT is moving forward, potential funding is being sought for the translation of the Dutch Lymphedema Framework’s document on lipedema, and preparations are being made to produce a 2nd edition of the Best Practices Consensus Document.

The ILF is perpetually concerned with supporting the development of individual country frameworks. A children’s strategy is being planned, as is the development of web-based communication tools.

Planning has already started for the ILF 2016 conference, being co-hosted by the Australasian Lymphology Association.

Concurrent sessions included a presentation by Canadian, Dr. Margaret McNeely from the University of Alberta, on a feasibility pilot study on night-time compression systems for breast cancer

related lymphedema. She found that women were indeed willing and able to wear these devices. A larger efficacy study is planned. Surgical intervention presentations were allocated to one entire track. Alex Munnoch reported on “Liposuction and Post-operative Compression to Reduce Lymphoedematous Limbs.” Liposuction is performed to remove fat bulk. Immediately following the procedure, the patient is put into a compression garment. To prevent fat re-accumulation, Munnoch suggests that compression garments must be worn for the remainder of the patient’s life.

Steve Norton presented on adapting Complete Decongestive Therapy (CDT) for paediatric patients. Norton is a strong advocate for using manual lymph drainage (MLD) to recruit collateral lymphatic flow.

In his opinion it is always beneficial whether alone or combined with compression.

He feels that if those with congenital lymphedema are given MLD from birth there is the potential to counteract lymphostatic fibrosis. Norton stressed that MLD is not massage, but rather a gentle stretching technique. In children, pump and stationary circle techniques are most effective.

The final presentation of the conference was given by Hugo Partsch of the University of Vienna on “Compression Therapy in Lymphoedema: Making decisions about pressure and frequency of bandage change.”

Partsch argues that elastic properties of bandages help maintain pressure. Inelastic products have greater pressure drops after application; as such, these types of bandages should be applied with greater initial pressure to compensate for the drop in compression over time. For sustained pressure he suggests using self-adjusting hybrid systems, Velcro band strapping systems or re-bandaging the extremity when pressure is lost.

The conference ended much as it began, with Dr. Neil Piller inviting academic debate and discussion on the topic of optimal compression therapy. He closed by thanking Margaret Sneddon (ILF board member), for her leadership role in organizing a successful conference and invited delegates to attend the 2016 ILF Conference in Darwin, Australia. LP Fa l l 2 0 1 4

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Clinical Perspectives

Managing the psychosocial aspects of lymphedema Using cognitive behavioural therapy skills towards better self-care

Successful care of lymphedema is good self-management. This research suggests that subtle changes in behaviour and lifestyle of patients could revolutionize a patient’s perspective on living with lymphedema.

By Jane Durston

S

ome people with lymphedema experience complex psychosocial issues, which have the potential to impact a patient’s overall well-being, as well as their adherence to the treatment regimen. Given that the key to successful management of lymphedema is good self-management, this may require changes in behaviour and lifestyle. To facilitate these changes, some cognitive restructuring may be beneficial.

It’s important that healthcare professionals appreciate the genuine frustrations that occur for some people with lymphedema.

Photos: CanStockPhoto

The National Health Service (NHS) and the National Institute for Health and Care Excellence recommends Cognitive Behavioural Therapy (CBT) as useful for people with long-term conditions.

The UK’s Lymphoedema Support Network (LSN) estimates lymphedema affects at

least 240,000 men, women and children in the UK, many of whom remain undiagnosed and untreated. Garry Cooper of the British Lymphology Society (BLS) notes, “England has yet to address the inequity in both policy and service provision. Until this is resolved, patients will continue to be misdiagnosed and mismanaged with all the resultant complications.” This is a global challenge that many countries, including Canada, face. The BLS’s, “Standards for Lymphoedema Care,” (2014) states the British GP Consortia and NHS Commissioning Boards should, “develop services in line with the long term nature of the condition such as the provision of psychological, physiotherapy and occupational services.”

It’s important that healthcare professionals (HCP) appreciate the genuine frustrations that occur for some people with lymphedema. They may not fully understand their condition, and sometimes find their general practitioner doesn’t, either. Instead, they may have been given a variety of mixed and indeed punitive, guilt-laden messages, e.g. you’re overweight, you have a swollen limb; you have to live with it, there’s nothing

Jane Durston is Operations Manager for the British Lymphology Society.

She graduated from the University of Bath Spa with a Postgraduate Diploma in Counselling Psychotherapy in 2012, and from the University of Gloucestershire with a MA (with distinction) in Critical & Creative Writing in 2013.

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that can be done. One patient reported being told, “it’s a small price to pay for surviving cancer – think yourself lucky.”

What kind of experiences do people with lymphedema report?

Ridner (2009:1) highlights a variety of recurrent themes in her research, “lack of treatment resources, lack of lymphedema research, pleas for research to be undertaken to study their conditions, a willingness to participate in research, deep anger that healthcare professionals seemingly either do not care or fail to understand the seriousness of their problems.”

Boxall & Taplin (2010:13) state, “75.5% of patients demonstrated a need for psychosocial occupational therapy input.”

Bulley (2007:29) reports, “several individuals found adjusting to living with this chronic disorder traumatic and felt the need for support.” They described anger and difficulties in accepting the impact of lymphedema on their lives. One service provider supported this, explaining that many patients need to go through, “a Fa l l 2 0 1 4

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phase of acceptance that they have this condition and it isn’t going to go away.”

Loss and grief Parkes (1998:856) suggests that, “the consequences of loss are so far reaching that the topic should occupy a large place in the training of health care providers – but this is not the case.”

What losses might a patient experience after developing lymphedema? ope gH g P hysical health and wellbeing g C ontrol over body g D exterity

g Mobility and travel

g Ability to work/access to employment

g Self-esteem/confidence

g Body-image

g Choice e.g. Ability to select/wear chosen clothing/footwear g F aith in the medical profession to “cure” us g B ody anonymity Both the swelling and the bandaging can draw unwelcome public attention and can result in people being asked uninvited questions about what’s “wrong” with them. People are often objectified by the media, and we are encouraged to make value judgments about who people are, based on how they look.

Therefore, a limb that looks “DIS-figured” may have more impact on how people are treated in society and how they perceive themselves.

Bulley (2007: 23) stated that in several studies, “disruptions to body image and confidence in personal appearance were perceived to be among the greatest problems.” It is important for us to recognize and challenge our own perceptions in this process. As Woods (2007:61) pointed out, “the perceptions of the healthcare professional influence our interpretation of the patient’s needs.”

People need to be supported through a period of grief about these losses, in order for them to move forward to a place of acceptance. Communicating hope that the condition can be well managed, is crucial.

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be encouraged to feedback any difficulties they are having in adhering with treatment (in practice). Linnitt (2005:5) points out that, “the psychological impact of lymphedema can be enormous...health professionals should never underestimate the psychological implications and physical disability that is often associated with the condition.”

Fu et al (2013) identified that there is a need to “develop a lymphedema-specific instrument to better characterize the psychosocial and social impact identified through the synthesis of qualitative studies”.

Hadert (2013:19) found that “embedding psychological interventions within physical health services and offering choice around whether to focus on physical or emotional

The Cognitive Behavioural Therapy Model ENVIRONMENT THOUGHTS PHYSICAL REACTIONS

MOODS

BEHAVIOURS

MOODS: (generally identified by one word), e.g. anxiety, depression, happiness, sadness PHYSICAL REACTIONS: e.g. sweating, giddiness, exhaustion, pain, increased heart rate THOUGHTS: Anything that runs through our head, including images/memories/questions BEHAVIOURS: Anything we DO: e.g. over-eating, social withdrawal, driving, walking ENVIRONMENT: All of our previous experiences in the world: where and with whom, we live/work today

management may confer additional benefits for people with long term conditions (LTC)”.

Hadert adapted Cognitive Behavioral Therapy (CBT) to guide patients with LTC towards self-help. This next section explains the basic theory behind the CBT model, as well as some beginner’s techniques for practice.

A Cognitive Behavioural Therapist listens to what the client has to say, and then categorizes each of their statements into one of these components. A small change in any of these five areas can impact on the other areas.

Understanding the patient’s “back story” can give the HCP vital clues about a patient’s vulnerability to certain barriers to treatment adherence. This will help the HCP assess whether the patient will benefit from additional support from the multi-disciplinary team.

Socratic dialogue Socratic dialogue is a method of questioning used to broaden our understanding of problems. It can be used to explore alternative ways of thinking and test out beliefs. This involves asking informational questions, e.g. “Can you give me a specific example?”

“How is this a problem for you?” “How did you feel?” “What did you do?” while listening attentively to the patient’s responses and making notes. From these notes, one can summarize what the patient has said, allowing them to make amendments. These can be followed by analytical questions: “How does this fit with that?” “What would you have done in the past?” “What would you advise someone else in this situation?” “Given these experiences, what do you think would help you next time?”

This enables us to shift from set ideas about the condition, to exploring what specific problems this patient is experiencing in their day-to-day lives. We might consider avoiding the use of the word “why.” For example, instead of asking, “Why haven’t you worn the compression garment...why haven’t you done the exercises?...why haven’t you lost the weight?” we could try, “what has got in the way of wearing the compression garment?…what benefits can you see from doing the exercises?...how do you think losing some weight would affect your condition? or even, “how is that working for you?”

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This can also really help the HCP to stop attempting to solve all the patient’s problems, but help the patient to find their own answers, through guided discovery, a process that involves asking pertinent questions that support people to discover their own solutions. Introducing the question, “when can you do that?” helps the patient commit to a timescale for change and identify things that are in their way. The HCP and patient can then work through strategies, to overcome any obstacles. LP

Further information and online CBT training are available from: www.cacbt.ca and www.aptcanada.com Patients can find self-help resources from: www.cmha.ca

References 1. B ell (1999:119,120) Doing Your Research Project. Third edition. Open University Press: Maidenhead.

2. British Lymphology Society (2013).

“Standards of Lymphoedema Care.” (online) Accessed on: 29.1.14. Available from URL: www.thebls.com 3. B oxall, S., & Taplin, N. (2010).

“A Macmillan Pilot: The Benefits of Occupational therapy in Lymphoedema.” Velindre Cancer Centre: Wales.

Pp 13.

4. Bulley, C. (2007). “Making a case for funding for lymphoedema services.”

Journal of Lymphoedema. Vol 2, No 2. p2,28,29.

5. C ooper, G. (2014) “60 second interview with Garry Cooper, Macmillan Lyphoedema Nurse Specialist”. Wound Care Today.

18.2.14 (online). Accessed on 19.2.14.

Available from URL: https://woundcaretoday.com/news/60sec/60-secondsinterview-with-gary-cooper-macmillanlymphoedema-nurse-specialist- 6. F u, M.R.; Ridner, S.H.; Hu, S.H.; Stewart, B.R.; Cormier, J.N. & Armer, J.M. (2013).

“Psychosocial impact of lymphedema: a systematic review of literature from 2004-2011.” Psycho-Oncology.

Perometer

John Wiley & Sons Ltd. pp. 1466-1484.

7. Hadert, A. (2013). “Adapting cognitive behavioural therapy interventions for anxiety or depression to meet the needs of people with long term physical health conditions: a narrative review.” Clinical Psychology Review. University of Exeter. pp. 1-45.

8. Linnitt, L. (2005). “Lymphoedema: Recognition, Assessment & Management.” Wound Care. March 2005 issue.

MA Healthcare:London. March Hitchcock & Hughes (1995:69) Research & The Teacher. Routledge: London.

9. Ridner, S. (2009). “The Psycho-Social Impact of Lymphoedema.” Lymphatic Research & Biology. Vol. 7, No.2.

Vanderbilt University School of Nursing: Tennessee. p 1.

10. W oods, M. (2007). Lymphoedema Care.

Blackwell Publishing:Oxford. pp 55-60.

Works consulted: www.thebls.com and www.lymphoedema.org

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Lymphedema Risk Assessment Tool

Answering the following questions with the help of your healthcare professional will provide an indication of your relative risk of developing secondary arm or leg lymphedema. If you have already been diagnosed with lymphedema, this assessment guide can also help determine the risk of it becoming worse. Once you have added up your score, you can determine whether you are LOW, MODERATE, or HIGH RISK.

ARMS LEGS

TEAR AWAY

EVENT/SITUATION

3 Score

EVENT/SITUATION

3 Score

Whole of breast removed (mastectomy)

2

More than 10 nodes removed from the groin

3

Part of breast removed

1

More than 2 but less than 10 nodes removed from groin

2

More than 10 nodes removed from armpit

3

1 or 2 nodes removed from the groin

1

More than 2 but less than 10 nodes removed from armpit

2

Radiotherapy to the groin/pelvic area

3

1 or 2 nodes removed from armpit

1

Fluids drained from wound more than 1 week

2

Radiotherapy to armpit area

3

Infection at the wound site after surgery

2

Radiotherapy to chest/breast area

2

Average of more than 2 infections (cellulitis) in the limb per year

3

Fluids drained from wound more than 1 week

2

Average of one infection (cellulitis) in the limb per year

2

Infection at the wound site

2

Heaviness, tightness or tension in the limb at times

1

More than 2 infections (redness) in the limb per year

3

Limb feels worse as the day progresses

1

One infection (redness) in the limb per year

2

Frequent cuts/scratches to the limb

2

Heaviness, tightness or tension in the limb at times

2

Dry or scaly skin on lower legs/feet

3

Limb feels different as the day progresses

1

Frequent cuts/scratches to the limb

2

Dry skin

2

OTHER PROBLEMS WHICH MAY ADD TO RISK

3 Score

OTHER PROBLEMS WHICH MAY ADD TO RISK

3 Score

Family history of leg swelling

2

Frequent long distance air/bus/car traveler

2

Previous or current other injuries to legs, ankles or feet

1

Limb is most often in a dependent position (standing)

3

Generally experience high stress levels

2

Generally have high blood pressure

2

Thyroid gland activity is not normal and not medicated

1

Diabetic but controlled by diet or medication

1

Diabetic uncontrolled

3

Some varicose veins or spider veins

1

Many varicose veins or spider veins

2

Frequent long distance air traveler

1

Previous or current other injuries to limb/shoulder

1

Surgery was on side of dominant hand

2

Generally experience high stress levels

2

Generally have high non-controlled blood pressure

2

Thyroid gland activity is not normal and not medicated

1

“At risk” limb is used for repetitive actions

1

Prior varicose vein stripping and scars

2

Often carry heavy loads for long periods using “at risk” arm

1

Smoking is currently part of my life

1

Smoking is currently part of my life

1

Body weight is a little high (overweight)

2

Body weight is a little high (overweight)

2

Body weight is very high (obese)

4

Body weight is very high (obese)

3

Diet is rich in animal fats

2

Swelling was present in limb prior to surgery

1

Swelling was present in limb prior to surgery/radiotherapy

1

Total Score

Total Score 0-10 = Low Risk

11-20 = Moderate Risk

More than 20 = High Risk

Piller, NB (2006) Lymphoedema Research Unit, Department of Surgery, Flinders Medical Centre, Bedford Park, South Australia, 5042 Editor’s Note: This guide is designed as an educational aid based primarily on experience, not evidence in literature.

Adapted and reprinted with permission - A soft copy can be downloaded at www.canadalymph.ca Fa l l 2 0 1 4

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Educational Initiatives

Encouraging the development of lymphedema management as part of home care services: Two models for educating community nurses

Instructing nurses and caregivers basic lymphedema management is essential to furthering effective care and treatment. A program based out of McGill University Health Centre mandates to promote education, undertake clinical research, and promote standards of best care to lymphedema patients and healthcare professionals.

N

urses in the community routinely provide foot, skin and wound care for patients with chronic edema, yet few are trained in lymphedema therapy. The number of hospital centres in Canada offering treatment for lymphedema to out-patients is small, and often these clinics are restricted to providing care solely for oncology-related lymphedema. Patients with lymphedema unrelated to cancer treatment, and patients with chronic edema who are unable to afford treatment privately are thus disadvantaged.

The interdisciplinary team at the Lymphedema Program of the McGill University Health Centre (MUHC), consisting of a medical doctor, physiotherapist, kinesiotherapist, research assistant and patient volunteer, are all trained in lymphedema therapy.

The program is charitably funded outside of the hospital operating budget and a full clinic operates one and a half days a week, providing assessment services and education on risk reduction and self-management of lymphedema to patients from Montreal and other regions of Quebec. During a second half-day, a lymphedema therapist provides follow-up and self-management for patients who are in need of therapy but are unable to access private treatment and are willing and

able to undertake self-bandaging. In addition to clinical assessment and patient education, our program has a broad mandate to promote the education of health professionals, to undertake clinical research and to develop and promote best practice standards of care.

At our weekly diagnostic clinics, we see patients with many severe medical complications, and those with huge limbs who cannot be treated simply by being fitted with compression garments. Some patients who need lymphedema treatment are unable to access it because of cost or lack of availability of trained therapists. To address this need, we began a long-term educational project to improve lymphedema management through community nurses.

Model one We developed an educational module that presents the basics concerning lymphedema management and risk reduction for presentation to nurses, who provide home care through the Quebec system of Centres Locale de Services Communautaires (CLSCs or Local Community Service Centres). The aim was to make basic education on lymphedema available to CLSC staff in their own local centres.

Pamela Hodgson, RMT, MSc. works with Dr. Anna Towers at the McGill University Health Centre Lymphedema Clinic (Montreal, Quebec) as a research associate and lymphedema therapist. She is an active member of the Canadian Lymphedema Framework.

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Photo: CanStockPhoto

By Pamela Hodgson

The presentations highlight basic anatomy and function of the lymphatic system, prevalence and types of lymphedema, treatment options for lymphedema and risk reduction behaviours. The role of nurses is emphasized, particularly in skin care and hygiene education, early diagnosis and cellulitis prevention.

Ignorance of patient need and of lymphedema in general are the main challenges that our educational presentations seek to address.

French and English presentations have been delivered in the Montreal area and we have received request for presentations further afield.

Model two In addition to this broad educational program, we also undertook a pilot initiative with five selected patients who met the criteria of financial and physical need for assistance, willingness to undertake bandaging and whose local CLSC nurses were willing to get involved in lymphedema treatment. The clinic Fa l l 2 0 1 4

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team developed an overall treatment plan and one of the therapists was assigned to meet with the patient, the community nurse and any caregivers at the patient’s home to instruct the nurse and caregiver in bandaging techniques specifically for that patient.

The role of the therapist was to oversee and monitor progress, and to modify treatment as necessary. Once edema reduction stabilized, patients were referred for their garment. In two cases a single nurse was involved but with the three others, several nurses and nursing aides were instructed in proper bandaging. In one case the therapist taught three nurses in the patient’s home and seven more at the CLSC. This required a lot of teamwork and communication. Bandaging differed somewhat from nurse to nurse and many did not want to do it. However, good results were achieved and the patient and nurses were convinced that intensive compressive treatment is effective.

Conclusion What have we learned from this pilot initiative? Nurses want practical information about

lymphedema management, and hands-on training in bandaging. Community nurses are already educating patients in skin hygiene and proper care and are using one or more bandaging systems in wound treatment.

They are already familiar with compression garments and treatment for venous disease.

Pre-existing knowledge, levels of competence in non-lymphedema bandaging techniques, and interest in learning new techniques may vary. Home care is not always provided by a single nurse; in many cases a rotating staff of nursing aides see the patient on a daily basis with a registered nurse making a home visit only once a week. Assuring a minimum level of competence is important in a situation where the staff is constantly changing.

Advocacy and education of health professionals are required to meet the needs of patients with lymphedema, especially those requiring physical or financial assistance.

Since the MUHC Lymphedema Program implemented its educational efforts to involve nurses in lymphedema homecare, we have observed a positive change in our interactions

Some patients who need lymphedema treatment are unable to access it because of cost or lack of availability of trained therapists. To address this need, we began a long-term educational project to improve lymphedema management through community nurses.

with CLSCs. In the past two years we have noted a greater interest in learning about lymphedema and a greater willingness to become involved in lymphedema management.

This important area still needs more attention.

We invite you in the lymphedema community to share your ideas and experiences so that together we may develop successful strategies to address this problem. LP

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Ask the Expert

Surgical treatments for lymphedema

By Anna Towers and David Keast

there is excess subcutaneous fat in the limb. Following this surgery, patients must wear compressive garments continuously for 24 hours per day to maintain the reduction in limb volume that was obtained by removing the excess fat. Compression garments must be worn for life, otherwise, the subcutaneous fat will reoccur. Brorson’s technique is now also being performed in a few other countries such as the Netherlands, Sweden, Scotland and the United States.

Another class of technique involves very delicate microsurgical manipulation of lymphatic vessel pathways, usually connecting lymphatic vessels to veins (lympathicovenous anastomoses). This technique works best in those with early lymphedema.

What kinds of lymphatic surgery Pioneered by Dr. Corradino Campisi and are being tested? his team in Italy, this technique requires a high degree of microvascular Dr. Hakan Brorson in experience and a careful choice Sweden has pioneered of appropriate patients. This a particular form of Patients need technique is controversial liposuction using to be aware that as other centres have smaller cannulas with surgery does not reported negative results one portalways used eliminate the need as well as adverse effects. facing downward Professor RG Baumeisto preserve the to wear compression ter in Munich performs subdermal plexus. This garments. lymphatic vessel grafting. technique is different This involves the transfer of from the type of liposuction pedicled lymphatics from a normal currently available for cosmetic limb to an abnormal one, using microlympurposes. Brorson’s technique is phatic anastomoses. This technique is used in patients with either lymphedema of meant for those with early lymphedema, the arm or leg in advanced stage II where before fibrotic changes have set in. Longall excess lymphedema fluid has been term results from multi-institutional trials mobilized through standard treatment and

Photos: CanStockPhoto

Q A

9:00 AM

Anna Towers MD FCFP is based out of the McGill University Health Centre in Montreal, Quebec. David Keast MSc MD FCFP works from St. Joseph’s Parkwood Hospital in London, Ontario.

Together, they co-chair the Canadian Lymphedema Framework.

Fa l l 2 0 1 4

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are required to determine the effectiveness of this technique.

Microsurgical lymph node transplantation is a more recent technique. Also known as vascularized lymph node transfer, this surgery involves transplanting lymph nodes from the groin with their blood vessels and anastomosing these to blood vessels in the axilla. There is no lymphatic anastomosis performed in this procedure. Professor Corrine Becker from Paris is the pioneer of this technique, which is currently being tested in the USA. In the meantime, at least one study from an independent group has expressed concerns about complications, including developing lymphedema in the donor limb.

Q

Would surgery eliminate the need to wear compression garments?

A

It is understandable that patients are looking for a “cure” for lymphedema and a means to avoid costly decongestive therapy and cumbersome garments. However, the circumstances when surgery may be appropriate are largely reserved for those who have largely deformed limbs that have not responded to traditional MLD and compression.

Patients need to be aware that surgery, at least in the current stage of development, does not eliminate the need to wear compression garments. For example, according to reports on the liposuction technique, patients actually need to wear Class 2-4 compression for 24 hours a day, not only post-operatively, but also for the rest of their lives.

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What is the status of surgical treatments for lymphedema?

In recent years, exciting developments in surgical treatments for lymphedema have caught the interest of patients and health professionals alike. In 2012, the International Lymphoedema Framework produced a position paper addressing the complex and often controversial issue of surgery, in an attempt to present a balanced

picture of how surgery fits within the total treatment protocol.1 These treatments are in the early stage of development and we believe that long-term studies by independent groups are required before their risks and effectiveness can be properly assessed.

Q

Are these surgical treatments available in Canada?

A

There are experiments using lymph node transplantation being conducted in Toronto. Surgical procedures for lymphedema are evolving with some North American centres just starting up programs.

Eligibility is on a case-by-case basis, with strict criteria for patient selection.

Surgeons require specific training and a considerable amount of experience before their outcomes can hope to be positive.

Photo: CanStockPhoto

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Patients should be aware that these techniques are in the experimental stage, and that surgical experiments are not subject to the same stringent controls as pharmaceutical trials. Most reports to date have small numbers of patients, use inconsistent measures and lack long-term follow-up.

We await further studies and a clearer idea of indications before being able to recommend these treatments.

LP

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Reference 1. Position Document on Surgical Intervention for Lymphoedema, International Lymphoedema Framework, 2012, www.lympho.org Resources

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Research News

LIMPRINT

By Susie Murray

One of the International Lymphoedema Framework’s (ILF) many goals has been to develop a toolkit for use by national lymphedema frameworks to assess the impact and prevalence of chronic edema on individuals and related healthcare services. LIMPRINT (Lymphoedema IMpact and PRevalence – INTernational Lymphoedema Framework), is a study designed by the ILF and 3M to assist and enable countries to establish the international scale of impact of chronic edema, provide evidence for practice, and to be used as a support mechanism for reimbursement.

LIMPRINT allows both a population-based study approach that looks at the proportion of a population found to be living with lymphede-

ma as well as a facility-based approach that profiles the nature of the patient population in specific health care settings. Current study participants are patients over the age of 18 who are already receiving care within their country’s healthcare system, regardless of their medical condition. Patients with chronic edema are invited to answer questions through a questionnaire and patient examination to assess its impact on their lives. This data will be entered into a “core tool,” and responses to questions regarding demographics and disability, quality of life, details of swelling, and, where appropriate, wounds and cancer, will be entered into a “module tool.”

The gathered information is then entered into

Susie Murray is a nurse and health visitor by background. She was asked to undertake a study interviewing children with lymphedema and their families in the UK and through that became increasingly interested in the condition and its effect on patients. She is a Director of the ILF who are undertaking the LIMPRINT study.

20 L y m p h e d e m a p a t h w a y s . c a

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a database for analysis, where it remains confidential and anonymous. A few sites have already begun to use the system.

The early results of these study sites were announced at the ILF Conference in Glasgow, Scotland, but, as they are incomplete and not yet published, it is impossible to publicly announce them until a later date.

Many countries have shown an interest in taking part in this study, which will require local financing, but we are optimistic that this exciting project can continue.

We hope that lymphedema will no longer be seen as a rare disease to be rejected by the medical profession. LP Editor’s Note: The Canadian Lymphedema Framework is honoured and proud to be one of the first countries to participate in this research study.

Fa l l 2 0 1 4

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Letters....

Letter to the Editor...

Dear Anna

and editori al team, The Pathw ays magazi ne arrived it looks nic safe and w e, comfort ell last we able readin and ads. ek. Thank g, and full you, o f interestin I totally g articles agree with the authors Editor, re: (see Summ Spring 201 er 2014 le 4 article) tha healing of Wow tters to t oedema re the acute . You d in uction will fe c tion and e at the sam guys laid stimulate nhance de e time it w ou al fense mec ill alleviate inflammato is no t magazi ways put h a p nisms; a in (in com ry medica ne o e bination w tion).

But the the o xception. and the ut a ver y it h a nticompressio th w S I n treatmen ver y er article took a lo pring iss ell the most a t is u well o c s ve u e k te ry a h often diffic ours, where a s we writte ver y a means o ult to tolera ll an t some o elevation sh n. go f reducing d the te in f o uld not be th town od. I als The cellu e y sw m neglected e e s lli c n e o g n o e fi ” on fo l rm i r m t a l a i th i su s s k a b t ed stantial pe we also fa one e. well, for as the vour non-e rcentage. looke I kno I think m the Alber a L u la e th s t d ti o c devices r suggests y art t w the ever y in this insta elastic com , it is less icle r a “hocke on s uncomfort pression. P nce, eads y I’ve a e but th tudy has able than a d d d in q is g c u o u e da strong m n n ddre i d fo t e o rt rn e e t a a n th d p t intolerance ssed a the banda l its need sh Dr. I. ges can re during the ever y is the da eased ould be re duce Daye first few d one’s ta; I -e ays, but a va s lu Jurav h

je a rs te c o e d y o . p (T fterwards Even elasti ncer ubigrip TM e inski c compress ns. ) has show C Ham if treatmen ion with tu n to be ve ilton, entre, t was adap bular ry e ff ective and te Onta d to w it in h well tolera d a iv comfortab idual pain rio te d ly wide me threshold: limb witho asure whic we usually ut harm, to h can be p s ta rt a ulled over dd anothe bandager layer of th the painfu on top as l e so sa o me ‘tube’ n as feasib size, etcete -or a stiff le, then sw ra, followin it c h g the reducti to a more these jerse narrow on of the o et of y tubular d edema. Psy full s cles on evices are a e n d h c t chologically an be use i ve t ry r r w o a e f ll d (when w accepted b ks all the patients su et) to cool y the patie Than ces for in your F down the ffering from nts n . e g e hot skin, a r a n n to i i e

p t f z ic S e a d o a s e r ye rm o is g s, a d B ti a o I ti ne in a s. o g ree with th

on ts sm e commen these circu Drag athway ine. I ge s ts m o s f the letter, tances eff P ti az ective com stressing th experience 2013 he mag f it and i y pression sh d and emp at in t o m e t v ould be ap a u d th e o n ti c I lo a p o e t p

rs f lie s ! o d n B r n . s e i b

s y an r e t regards, e d h muc g me un tter. Che M ie e Flour, Belg in ium help edema b h p m ly

t r he Reic Gail , B.C. lt Sche

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Patient Perspectives

Life with lymphedema M

y journey with lymphedema began in October 2010. After being diagnosed with Triple Negative, Invasive Ductal Carcinoma, Stage II – Grade 3, the second most aggressive form of Breast Cancer, on September 17, 2010, I had the first of what would be a total of three surgeries, beginning with a lumpectomy with axillary lymph node dissection. I had 18 axillary lymph nodes removed that day; two of which tested positive for cancer.

Approximately a week after my first surgery I noticed swelling developing in my left arm and hand. At my first follow up appointment with my surgeon, postsurgery, she confirmed the diagnosis - lymphedema.

Approximately a week after my first surgery I noticed swelling developing in my left arm and hand. At my first follow up appointment with my surgeon, post-surgery, she confirmed the diagnosis - lymphedema. I began an aggressive, dose-dense chemotherapy course of treatment on December 21st, 2010 for a total of eight rounds of which the last was on March 31, 2011. Every two weeks I received chemotherapy.

My lymphedema grew worse. One month post-chemo, my surgeon booked my second surgery to further clear the margins of where the tumor had been. After my first surgery and again after the second, I experienced post-operative infections, which resulted in very low white blood cell counts and high fevers that required rounds of antibiotics to resolve; all of which affected and worsened my lymphedema.

The pathology came back from the margin surgery and showed the cancer had survived chemo. On June 1, 2011 I had my third surgery to fully remove my left breast and some of the surrounding muscle tissue against my chest wall. I did not know at that point how much worse lymphedema could get until I began aggressive radiation therapy at the beginning of July 2011 to the middle of August 2011, every day, Monday to Friday, for six weeks. Radiation therapy sealed the deal with my lymphedema. I live with chronic swelling, peripheral neuropathy, and constant

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drastically and permanently affected.

I also live with the recurrence of a rare condition called Sweet’s Syndrome. Sweet’s Syndrome — also known as acute febrile neutrophilic dermatosis — is a rare skin condition marked by rapid onset, increase in swelling, fever and painful skin lesions that appear mainly on my left arm from shoulder to finger tips.

My motivation for joining the BCLA first as a member and then, as their Vice President, is to bring a greater awareness of the effects of lymphedema on quality of life to a broader audience of oncologists, patients, medical practitioners, medical researchers, and government officials. There is a need for greater supportive care for patients with primary and secondary lymphedema. At

for joining the BCLA first as a member and then, “ My motivation as their Vice President, is to bring a greater awareness of the effects of lymphedema. ,, pain, despite Manual Decongestive Therapy (MDT), compression garment and the use of a Lympha-Press pump; my quality of life and level of physical ability have been

Maria Atherton is the BCLA Vice-President and a breast cancer survivor living with lymphedema. She works part time as a Special Education Assistant.

Her volunteer experience, grant writing and fundraising skills are a welcome asset to the BCLA. She is married with three daughters ages 13, 11 and 10.

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Photo: CanStockPhoto

By Maria Atherton

this point, in British Columbia, supportive care for lymphedema patients is nearly nonexistent. There is a strong belief amongst oncologists and physicians that there “is no evidence based proof medically, that any method of treatment for lymphedema is effective for long-term improvement.”

This statement alone strengthens my objective to promote greater research and the implementation of knowledgeable and effective supportive care. LP Fa l l 2 0 1 4

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Affiliate Profile

BC Lymphedema Association The BC Lymphedema Association was born out of the vision, passion and leadership of four founding members, committed to building awareness of, advocating for, and bringing empowerment to people living with lymphedema. The BCLA was officially launched in 2007, registered in 2008 and obtained charitable status in 2009.

Their mission statement: Promoting healthy and hopeful living with lymphedema BCLA goals: • Build awareness across BC and provide information about lymphedema and available treatment/management options • Advocate on behalf of people and families affected by lymphedema • Encourage patients to take an active

role in their rehabilitation • Be an active and contributing member of a national lymphedema organization • Be known, respected and promoted by our key stakeholder groups, who know us for our unbiased professional conduct • Encourage and support local, national and international lymphedema research A brief history: 2009 - Obtained charitable status and launched our website and the quarterly newsletter In The Flow.

2010 - Held first half-day lymphedema conference on March 6. This day was proclaimed Lymphedema Awareness Day (LAD) in 36 cities across BC. Presented at several conferences and published articles.

2011 - Logo was changed to accurately depict the organization’s mission. Held

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several fundraising events, developed and distributed promotional materials and held our second LAD with Professor Neil Piller as the Keynote Speaker. We were thankful to the Canadian Breast Cancer Foundation and our many vendor sponsors. Hosted a booth at the BC Health and Wellness Show.

2012 - Pathways was launched and an insert replaced our quarterly newsletter.

Held 3rd Annual LAD with Dr. Anna Towers as the Keynote Speaker. Hosted a booth at Health and Wellness Show.

2013-2014 - Two new board members have been added to bring renewed energy.

Currently recruiting a part time Executive Director.

Contact the BCLA for local resources including a list of certified lymphedema therapists at www.bclymph.org

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Helpful Suggestions

Hints and Tips

Practice wrapping Even if you wear compression garments, it’s a good idea to keep compression bandaging on hand. This way, when you wash your garments, you can

use the bandaging to give the garments enough time to dry, as well as to stay current with your wrapping skills. If your therapist has shown you self-bandaging, it may also be useful to do this for a period of time before being measured for every new compression garment.

Discuss this with your therapist.

Care for cracked cuticles As the winter months approach, with cooler temperatures comes

dry skin. It is important to keep your skin moisturized to avoid dry, cracked cuticles, which can increase your risk of cellulitis – a serious infection in lymphedema patients.

For a list of dermatologist recommended skin care products, refer to the Spring 2014 issue of Pathways.

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Send us your hints and tips Why not make it easier for those living with lymphedema by sharing your practical day-to-day living tips with us. We invite patients, caregivers and health professionals to send in your suggestions to canadalymph@live.ca.

Photos: CanStockPhoto

Mirror, mirror on the wall Take the time every so often to complete Self Manual Lymphatic Drainage in front of a mirror. This makes you more conscious of the task, and you are more likely to do a complete and thorough job.

Victoria Vancouver Winnipeg Toronto Montreal Chicoutimi Fredericton Halifax

Train in Canada

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Research Advances

Did You Know?

Research forges ahead Still in its early stages, the Lymphedema Research and Education Program has laid a strong foundation for exciting advances through collaborative efforts to investigate the basics of lymphatic function.

Made possible by a $5-million gift to the Calvin, Phoebe and Joan Snyder Institute for Chronic Diseases at the University of Calgary, the program is led by Dr. Pierre von der Weid, associate professor in the Department of Physiology and Pharmacology.

Using isolated vessels treated with inflammatory agents and animal models of inflammation/edema, research has begun

using methods both inside and outside living subjects to discover how lymphatic pumping is altered in these conditions and how it may influence lymph drainage.

Dr. von der Weid, Dr. Shan Liao, and trainee Ethan Chen attended a Gordon Research Conference on lymphatic biology in Italy in March, where they presented some of their early work.

The team will work out of the Kipnes Lymphatic Imaging Suite. High-powered equipment has been purchased to facilitate the research including two high performance microscopes.

These microscopes are equipped with lasers, which allow high-sensitivity, high-speed and high-resolution imaging deep into tissue, as well as high-resolution 3D imaging. They will also be used to study the interaction between

lymphatic vessels, lymph and immune cells which are transported in it, and to learn about these interactions and behaviours deep into the tissue of normal and diseased animal models.

Visualizing these events is key to understanding how the lymphatic system works, and why it does not in patients with lymphedema.

Expanding the understanding of the complex biology of the lymphatic system is the first step to improving treatments and will help to develop new diagnostic and therapeutic approaches for patients affected by the disease.

“We have an incredible opportunity to promote and advance lymphatic research in Alberta and, more importantly, give hope to the hundreds of Albertans [as well as the thousands of Canadians] suffering from lymphedema” says Dr. von der Weid.

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You Are Not Alone You have access to information, resources, contacts and support from people who know what you’re going through from

Education

their own personal experience. You have the following organizations on your side.

Alberta: Lymphedema Association ofEvents Alberta Canadian and International January 3-9, 2015 Saskatoon, SK

www.albertalymphedema.com

British Columbia: BC Lymphedema Association

www.bclymph.org

Quebec: Lymphedema Association of Quebec

www.infolympho.org

ALT Aqua Lymphatic Therapy – Tidhar Method Manitoba: Lymphedema Association of Manitoba www.lymphmanitoba.ca Instructor: Dorit Tidhar. This method enhances lymphedema therapy by combining principles of lymphatic anatomy and physiology with the effect of water immersion. To register, CDT health professionals should Ontario: Association of Ontario www.lymphontario.ca email TracyLymphedema Gardikiotis at t_gardis@yahoo.com

March 6-7, 2015 Toronto, ON

The Lymphedema Association of Ontario will be holding its 17th annual lymphedema conference for patients and health professionals.

Keynote Speaker is Dr. Francis. n www.lymphontario.org Saskatchewan: Lymphedema Association of Kathleen Saskatchewan www.sasklymph.ca

March 14, 2015 Winnipeg, MB

Lymphedema Awareness Day Symposium Hosted by the Lymphedema Association of Manitoba. Visit www.lymphmanitoba.ca for more information.

2014 Dates Canada and the United States

Therapist Training and Certification Programs. Courses are offered by various educational schools for qualifying healthcare professionals. Some provincial lymphedema associations also organize or host educational courses. We encourage you to refer to the websites of our advertisers and the individual provincial associations for specific dates and locations.

You Are Not Alone

You have access to information, resources, contacts and support from people who know what you’re going through from their own personal experience. You have the following organizations on your side.

Alberta: Alberta Lymphedema Association

www.albertalymphedema.com

British Columbia: BC Lymphedema Association

www.bclymph.org

Manitoba: Lymphedema Association of Manitoba

www.lymphmanitoba.ca

Ontario: Lymphedema Association of Ontario

www.lymphontario.ca

Quebec: Lymphedema Association of Quebec

www.infolympho.ca

Saskatchewan: Lymphedema Association of Saskatchewan Inc.

www.sasklymph.ca

The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners for their financial support in making this magazine a reality.

Platinum Sponsorship

Silver Sponsorship

CANADIAN LYMPHEDEMA FRAMEWORK

PARTENARIAT CANADIEN DU LYMPHOEDÈME

About the CLF The Canadian Lymphedema Framework is an academic and patient collaboration, working to improve lymphedema management for lymphedema and related disorders in Canada.

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The CLF has affiliate agreements with its provincial partners for distribution of Pathways including customized inserts.

Alberta Lymphedema Association Atlantic Clinical Lymphedema Network BC Lymphedema Association Lymphedema Association of Manitoba Lymphedema Association of Ontario Lymphedema Association of Quebec Lymphedema Association of Saskatchewan

Charitable Registration 85160 1260 RR0001

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